CONNECTICUT BIRTH TO THREE SYSTEM PRESCHOOL SPECIAL show him how she smiles now and loves to cuddle

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    Working together for children with disabilities INFORMATION FOR FAMILIES AND PROFESSIONALS SPRING 2011, VOL.11, NO. 7

    Produced by the State Department of Education Early Childhood Special

    Education Program and the Connecticut Birth to Three System in collaboration

    with the

    COOPERATIVE EXTENSION SYSTEM College of Agriculture & Natural Resources

    This article is translated into Spanish on page 2. Ver la versión española de

    este artículo en la página 2.

    Facing Disability Together: Families are more than Moms and Dads By Vivian J. Carlson, Ph.D., Human Development & Family Studies, Saint Joseph College, West Hartford, CT

    “ When the doctor told us that Mira has Down syndrome, we were so stunned that we couldn’t hear anything else that she said. As those first days passed and we saw Mira’s quiet determination to survive in spite of her heart surgery and difficulties with sucking and swallowing, we fell in love with her. Our love was mixed with fear, anxiety, and hope. My mother came to the hospital right away, but she was afraid to hold Mira. My father didn’t even come in. Michael’s parents visited once then helped care for three-year-old Robert at home. My sister came to the hospital to hold Mira every night while we went home to spend time with Robert.”

    When family members realize that one of their own children has a disability, they begin a process of grieving for the loss of the expected child, learning to understand the realities of their child’s current and future needs, and adapting their daily lives and family roles to an entirely new reality. Family members are challenged to cope with their own emotions and beliefs about disability while trying to maintain positive relationships with one another.

    “ I was angry with my father and disappointed that my mother still seemed afraid of Mira, even after we brought her home. Michael’s parents were good about helping out with Robert, but rarely paid attention to Mira. My father seemed to be avoiding us.”

    The intensity of emotions aroused by the discovery that a family member has a disability can be overwhelming for extended family members as well as parents and siblings. Beliefs about the causes of disability vary widely across generations and among varied cultural and religious groups. Older

    generations may believe that they are personally responsible for passing on ‘defective’ genes. In the recent past, many families hid family members with disabilities from others, often by placing them in institutions. The fact that a family member had a disability thus became a shameful and never-to- be-spoken-of secret.

    “ I decided to talk with my father and try to find out why he was avoiding us. I went to see him when mother was out and tried hard to tell him how sad I felt about not seeing him and worried that my children were going to miss knowing what a wonderful grandfather he is. He broke down and actually cried, telling me that he had a little brother I had never heard about who was ‘never quite right.’ His brother was sent to a state institution and died at the age of 12. I told Daddy that Mira would always stay with the family and be a part of our community. She is a beautiful baby and has already taught us so much about persistence and patience and love.”

    Finding a way to talk with family members about their beliefs and experiences with disabilities is not easy. It requires a loving approach without blame or judgment and an open-minded willingness to listen and understand. Encouraging family members to share their emotions and experiences can bring everyone closer together. Acknowledging the past and actively welcoming a more hopeful future is a part of the process of acceptance that will help to lead families towards resilience and unity. Professionals who are skilled communicators can offer empathy and support to families as they struggle to cope with individual fears and adaptations.

  • 2 BIRTH through 5 NEWS SPRING 2011, VOL. 11 NO. 7

    “ Michael sat down with his parents and let them know that he was puzzled by their lack of attention to our sweet daughter. He asked them what they knew about Down syndrome and how they felt about Mira. His father insisted that there were no genetic problems in his family and that this must have come from some other part of the family. Michael’s mother finally admitted that she was taught that God punishes parents who have sinned by giving them children with disabilities. Michael was stunned and angry at first, but bit his tongue and explained that Down syndrome does not usually run in families. It is an accident that happens when the cells that form the baby first start to divide. He asked his mother to consider that God may have given Mira to our family as a special gift—a child who will teach us many things about what is most important in life. And that perhaps we were chosen because we have the strength and love among us to understand the blessings she will bring to us.”

    Changing deeply held cultural and/ or religious beliefs is neither a quick nor an easy process. Simply opening up the discussion and beginning to communicate about these ideas is a very important step toward mutually rewarding family roles and interactions. Helping parents understand that extended family members may not share their ways of understanding disability may assist them in their efforts to establish more positive relationships.

    “ So now my father comes over to the house. He mostly still plays with Robert or helps Michael fix things, but I try to bring Mira to him and show him how she smiles now and loves to cuddle. I can see that he’s starting to relax a bit and smile at her and let her hold his finger. My mother comes over too and will

    now sit in the rocker with Mira while I get a few things done around the house. My sister stays with the kids one night every weekend and we visit Michael’s parents every Sunday. We show them all the new things that Mira does and talk about her therapy and Robert’s preschool. I think they’re beginning to get more comfortable with Mira. I guess maybe I expected too much of the grandparents at first. It must be very hard for them to understand that everything has changed for children with disabilities since they were young.”

    Early intervention and preschool professionals who understand the interconnectedness of families, the complexity of family efforts to adapt to the presence of a child with disabilities, and the stressors that many parents face will learn to model patient, supportive, and respectful communication and relationship-building skills. Children who participate in programs designed to actively encourage the participation of all important family members will be more likely to experience resilient, positive and mutually supportive family environments.

    Afrontar juntos la incapacidad: Las familias incluyen más que papás y mamás Por Vivian J. Carlson, Ph.D., Estudios del desarrollo humano y la familia, Saint Joseph College, West Hartford, CT

    “ Cuando el médico nos dijo que Mira presentaba el síndrome de Down nos sentimos tan aturdidos que no podíamos seguir escuchando lo que nos decía. Al pasar los primeros días y ver en Mira una serena determinación de sobrevivir pese a la cirugía del corazón y dificultad para chupar y tragar, nos enamoramos de ella con un amor impregnado de temor, ansiedad, y esperanza. Mi madre vino inmediatamente al hospital, pero no se atrevió a cargar a Mira. Mi padre ni siquiera vino. Los padres de Michael nos visitaron una vez y ayudaron cuidando en la casa a Robert, de tres años. Mi hermana venía todas las noches al hospital a cargar a Mira mientras íbamos a la casa a pasar un rato con Robert.”

    Cuando los miembros de la gran familia se dan cuenta de que uno de sus vástagos tiene una incapacidad, inician un proceso que incluye aflicción por la decepción, comprensión de la realidad en cuanto a necesidades actuales y futuras de la niña, y adaptación a la nueva realidad. Los miembros de la familia sienten el reto a afrontar sus propias emociones e ideas sobre la incapacidad mientras tratan de mantener entre si relaciones positivas.

    “ Yo estaba enojada con mi padre y decepcionada de que mi madre parecía temerle a Mira, aun después de llevarla para la casa. Los padres de Michael eran buenos en lo que ayudaban con Robert, pero rara vez le prestaban atención a Mira. Mi padre parecía que nos esquivaba.”

    La intensidad de las emociones que despierta la conciencia de que un miembro de la familia tiene una incapacidad puede ser

  • SPRING 2011, VOL. 11 NO.7 BIRTH through 5 NEWS 3

    abrumadora para los miembros de la familia y también para los padres y hermanos. Las ideas sobre la causa de la incapacidad varían a través de generaciones y entre grupos culturales y religiosos. Los miembros de generaciones anteriores pueden sentirse personalmente responsables por haber pasado genes defectuosos. En un pasado reciente muchas familias ocultaban los miembros con incapacidades, hasta ingresándolos en instituciones. El hecho de que un miembro de la familia tenía una incapacidad parecía ser un secreto bochornoso del que no se debía hablar.

    “ Decidí hablar con mi padre y tratar de averiguar por qué nos evitaba”. Fui a verlo cuando no estaba mi madre y traté de decirle cómo me entristec